Monday, May 18, 2015

Week 91: Great Strides Madison

I hardly dare to type these words, but this week we have no health issues to report. None. Everyone is well. Now, dear readers, please go throw some salt over your shoulder or knock on some wood or whatever it is you can do to help us avoid any jinxing that may occur because I have put these words on the internet.

This weekend was a real treat. Our friend Jon came to visit and join us as part of our team for the Great Strides walk on Sunday. The weather Sunday morning looked pretty dodgy, but luckily the rain managed to hold off. The walk began and ended in the stadium that is home to the illustrious Madison Mallards (a minor league baseball team). All the teams rallied there before the start, and requisite team photos were taken. Then, the official from the CF Foundation and I said a few words--my speech is below. Finally, it was time to walk, and we did about 3 miles through a beautiful park. I got to reconnect with another CF mom from the local community that I hadn't seen since last summer. It was really nice to chat with her--even though this was only the second time we've met in person, it feels like we're old friends since our kids are around the same age, go to the same clinic, and have faced a lot of the same issues. We spent most of the walk trading tips and ideas, and making plans to connect at some other CF Foundation events in the coming months.

Thanks again to everyone who sponsored us this year, we are so grateful.

Great Strides Speech, 2015

Good
morning.My name is XXXX, and I am the
captain of Team XXXX.We are
walking with you this morning for my son, Lemon, and everyone else who is
afflicted with cystic fibrosis.

Cystic
Fibrosis is a genetic disease that affects many parts of the body, especially
the lungs and digestive system.I think
you can see as you look around you this morning that people with cystic
fibrosis and the people who support them are a very special community.We are a community of just 70,000 patients
worldwide, and yet we have the ear of the President, the head of the National
Institutes of Health, and the major pharmaceutical companies.We may be a small community, but we are loud and we are
relentless, and thanks to everyone here, our message is being heard.

These are exciting
times for the cystic fibrosis community.Just 5 days ago, an FDA advisory panel voted to approve Orkambi, a two
drug combination that will treat the root cause of CF in 50% of patients.Along with Kalydeco, which was approved a
couple of years ago, that means there are now drugs to treat the underlying
defect in over 60% of CF patients.For
those of us in the remaining 40%, I have confidence that great medicines are
coming for us soon as long as we keep up the fight.

Today, we
are here to vote with our feet.We are
here to say that we are never giving up hope.We are here to say that we want Lemon and every other patient with cystic
fibrosis to live a long, full life.We
are here to say that we can taste victory and we will not give up until we
achieve a cure for everyone with cystic fibrosis.

We are here
to say that every dollar we raise is one dollar closer to our goal.We are here to say thank you to the CF Foundation, to our sponsors, and to everyone who has supported us on this
journey.This is a long hard fight, and
we could not do it without you.Have a
great walk!